Posted tagged ‘Cancer’

Table For One

April 10, 2014

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This is my first night alone, friends and family having all returned to their regularly scheduled programming, as Shel used to say. And tonight, because grief has its own logic, it turned out that eating dinner alone was one of the harder things I’ve had to do lately.

I know, a lot of you probably couldn’t eat a thing at a time like this, but I’ve never been that way, and have now proven definitively that I never will be. Most of me thought that I should be eating something standing in the kitchen, or in front of my computer. A small, sane part of me remembered the words of the wise Hospice social worker, who advised me to begin right away to find “a new normal.”

All day today I’ve been thinking about the new normal. I can flush the toilet early in the morning without worrying about waking Shel up. I can open the blinds when I wake up, because he’s not still sleeping. I can have breakfast right after I open the blinds, because I’m not letting him get his sleep. And so on and so on, all through the day, until dinnertime, when I froze. But then I remembered some excellent chicken in red wine vinegar and crème fraîche left over in the fridge, from when Tom and I made dinner on the night Shel died.

I dared to set the table, pour wine, sit and eat without even a book in front of me. I’ll confess that I didn’t really taste what I was eating. But I did it. I sat at a table for one.

Fit For A King

March 26, 2014

DSC_8210Hospice has a thing they call respite care, which allows the caregiver (me) some time away from the patient (Shel). But actually, as you might imagine, I don’t actually want to be away from Shel, although I definitely do want to get away from thinking about cancer all the time. What’s my respite? Baking. Which is a good thing, since sweets are about the only food that appeal to Shel these days, so we’re in synch.

Today I wanted to bake something fancy, but I didn’t want to go to the store. I searched around for something I could make from my pantry and fridge, et voila, galette des rois! As I wrote here, eating galette des rois, a crispy buttery frangipane-filled treat, is an annual custom in France, deliciously done in early January. So making one at the end of March, not to mention making it rectangular instead of round, would give a Frenchman fits. Nonetheless, there you have it, my first homemade galette des rois. And really, it could scarcely be easier.

I followed David Lebovitz’s excellent recipe, with just a few tiny tweaks. He calls for orange zest, I used a few drops of orange oil instead. He calls for rolling out the puff pastry, but I had some all-butter puff in the freezer that is already sheeted out flat, so I just used it as it was, no muss, no fuss. (Seattle folks, get this at PFI) He calls for several chilling stages, but I just went ahead and put it together as soon as my puff pastry was thawed and popped it straight in the oven.

Decorating it is really fun, and is actually the reason I was drawn to this recipe. David demonstrates a cool edge-fluting technique that I’ve never used before, but am certain to use again. And drawing on the top to create that chevron pattern is an exercise in thinking about anything but cancer.

So there you have it, my respite solution, fit for a king, fit for Shel, and providing a sweet surprise for the next few folks that are here and hungry. Beats cancer any day.

Ears To The Ground

March 16, 2014

DSC_7939Often we’re completely wrapped up in the sorrow of it all. Sometimes, though, we manage to lift our heads and inhabit the big, wide world. Sometimes, we even hang out on Facebook! And if I hadn’t paid attention to a little FB post from a local chef, kept my ears to the non-cancer ground for once, I wouldn’t have been able to put such a lovely dinner on the table. Yes, finally it’s about food again, because thanks to some good Hospice drugs, Shel has some of his appetite back!

DSC_8199Tonight, a day early, we had a beautiful corned beef and cabbage meal, thanks to our own Hitchcock Deli, which brilliantly provided house-corned beef and cabbage kits. Quelle idée, what a great idea! They assembled a beautifully corned beef, cabbage, potatoes, spices, a jar of house-made mustard, and a can of Guinness, plus a recipe. All I had to do was simmer it, and that was a good thing, since cooking has been getting really neglected around here. What I couldn’t manage to do was to find a white plate to photograph it on, so please forgive the oh-so-retro look here. It tasted way better than that.

It was actually just delicious, and I have to say that the corned beef was even better than the ones I’ve corned myself, which is saying a lot. Since most of you won’t have access to this cool little kit, let me say that adding a big can of Guiness to your corned beef simmering water really is a nice lick. And so Shel and I ate well, and praised the luck ‘o the Irish, who make such great literature and whiskey.

DSC_8203And for those of you who, like me, don’t drink beer, which is the logical drink with a meal simmered in Guinness, I’ll say that I surprised myself by walking into my little cellar and straight to this bottle, which turned out to be the perfect match.

So I heard via social media about the best and quickest route to a  lovely, lively Irish dinner kit, Shel’s been feeling well for a couple of days, and the kitties haven’t been fighting. Much. I’m keeping my ear to the ground for more good news and I hope you are too.

End Of The Rainbow

March 4, 2014

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Is there gold at the end of this rainbow, glowing just outside our house? I think that it’s safe to say: yes, there is, although it’s the sort of gold that you might prefer to avoid.

The targeted drug that Shel was taking was making him feel terrible, and there was no sign that it was actually making him any better, so he has decided to stop taking it. Today he enrolled in the hospice program, and we will be doing everything we know how to do to make the rest of our life together as full of joy, grace, and peace as it possibly can be.

It’s the hardest decision we’ve ever made in our 20 year quest to manage his cancer. If you’ve been following his story, you know that we’ve tried just about everything available in the U.S. and in France. He’s gotten better, he’s gotten worse, we’ve hoped, we’ve despaired, and we’ve been constantly looking for the Next Good Thing that medical research had to offer him. We’ve finally run out of options, and we’re stepping off that roller coaster.

Now our job is to live as well as we can, knowing that we don’t have all the time in the world. To continue to love in the face of loss, to try to laugh a little every day, and also, to fold the laundry and clean the litter box, because you still have to do all that, while you can.

So I guess the pot of gold may be a new-found peace. I’m not sure, I haven’t had the time to test my theory yet, but I’m thinking this will be true. Since we’re suddenly freed from the constant pressure to search for and try out new treatments, with all the side effects they entail, in theory we’re now fully available to live in the moment, which is supposed to be a sweet place. Maybe we’ll see each other more clearly now, through this final prism. We might even discover new things to love about each other. Maybe there will be rainbows every day. Spring is coming soon, and it’s a beautiful time to be alive.

Drama Queen

February 14, 2014

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You all must think I’m a total drama queen. Every couple of years I come here and tell you that Shel’s about to die, and French Letters goes all dark and dramatic.

DSC_8079Sometimes we’ve been in France, sometimes in America, but the despair has always been the same. I wish I could exclaim Alas! in English like I can say Hélas! in French, without sounding affected, because alas is the only thing we feel at the prospect of Shel’s impending end. We never get to the Resignation or Acceptance stages that are supposed to be part of the process of dying. We are never resigned, never can accept the idea, and generally gnash our teeth and thrash about at the prospect.

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It’s all we’ve talked about for the past few weeks, except when we’ve been talking about the Olympics. Looking death right in the face and never learning equanimity. Expecting Shel to die any day now. Freaking the fuck out, actually.

But now he’s been taking the new drug for a little over a week, and he’s feeling a bit better. He’s gone from saying “honey, stockpile the morphine” to seldom taking any. He’s been saved so many improbable times, by heaven knows what – should we sell our stock in Kleenex and dare to hope again?

How It’s Going

February 7, 2014

DSC_8077People ask me all the time how Shel’s doing. I think this is the truest answer, to say how he’s not doing. Now I’m the one who’s driving when the two of us are in the car, I’m loading the dishwasher, I’m putting out the garbage and recycling, I’m getting the paper and the mail in the morning, I’m doing Shel’s laundry, and heaven help me, sometimes I’m even making the coffee. These are things I wouldn’t have thought of doing just a month ago, because these were Shel’s jobs. Now they’re mine.

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And I’m learning that it’s a sacrament to fold Shel’s laundry.

Light A Candle

January 23, 2014

IMG_7292Friends and dear ones, light a candle for us, please, because we’re in bad shape over here. Shel’s in a lot of pain, plus now he’s doing ten more days of radiation for spinal metastases. The insurance company, predictably, refused to pay for the targeted drug, but we’re appealing that and are keeping our fingers crossed.

I wake up in the morning, my pillow already damp with the first of the day’s tears. Mascara is utterly wasted on me. Toby is learning to go outside, on a leash, and shivers when he realizes how big and cold the world is outside the house. Me too. Shel struggles valiantly on, like the gull flying past, now finding a bright evening ray, winging over dark water, catching the last of the light.

Mutation Celebration

January 14, 2014

DSC_6097-001This is our dear friend Bill, who died completely unexpectedly this week, and Shel, who is a mutant. Yes, although we’re unspeakably sad that Bill has left us, we’re so glad to learn that I Married A Mutant.

Shel’s test came back positive for the BRAF genetic mutation, which means that a protein that is involved in cell growth is faulty in my Best Beloved, and also, that there is a targeted drug that might possibly help him.

Quite a week this has been, so far, with such terrible and such wonderful news, tumbling over each other, all raw and unruly. Quite a week.

Scattered, Shattered

January 9, 2014

DSC_6730Cancer will steal your soul, if you’ll let it. It scatters your hopes, shatters your dreams, leaves you trembling in the dark, tossing fitfully, waking to a tear-soaked pillow. And that’s just the disease I’m talking about.

Sometimes the treatments are so harsh that you’d pretty much rather die than take them. That’s how Shel felt last week, trying a new and ultra-toxic drug. But this week we both feel even worse than that, because of a medical error. We’ve been waiting for five weeks, since his biopsy for genetic sequencing, to see whether he’s a candidate for a treatment targeted at a specific mutation that he may or may not have. But yesterday we learned that the surgeon, after performing the biopsy, never correctly completed the paperwork to have the lab analyses done, and so the five weeks have been utterly wasted. Five weeks during which Shel’s been sliding painfully downhill, really suffering.

It hasn’t all been bad, I guess. We had Christmas, and New Years during that time. We had family and friends. We sat by the fire, harvested our first oysters, drank a lot of Champagne. And we had hope. Hope that although Shel gets visibly worse with each passing day, the results of the biopsy would allow him another treatment option. When we found out yesterday that the hospital had made a huge error, we had one of our darkest days.

Now, amazingly, inevitably, we’re daring to hope again, because now that the error has been discovered they’re making a mad dash to get the results. We’re hoping that Shel will have the mutation, and that he’ll be able to tolerate the treatment if he does. We’re hoping that he’ll be able to hang in there a little longer, that his pain will diminish, that his appetite will come back, that he’ll be able to wash the dishes without getting out of breath, that he’ll feel joy in something, that he’ll be at peace with the way it’s turning out, that he’ll be able to choose his moment and his way to leave us, and that it won’t be too soon.

Please keep him in your hopes and thoughts.

Tree Metaphors

December 17, 2013

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Sometimes, even though it’s Christmas, you’re not going to get the thing you want most. In Toby’s case, it’s to be allowed to take all the ornaments off the tree. In my case, it’s for Shel to get well. Both of us are learning to cope with disappointment as life swats at us again and again.

DSC_7868This cancer thing makes it seem like life’s constantly sliding downhill, taking a wild ride on a slippery slope,

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resolving to a downward spiral. But then, maybe people who don’t live with cancer feel that way too, sometimes, maybe even at Christmas. This year was the first time in many Christmases that I decorated the tree alone, Shel had no energy to help, and Eric, recovering from back surgery, is forbidden to crawl around under the tree, let alone get up and down off the ladder dozens of times because someone (wonder who that could have been) got a tree that is too tall to trim on one’s own two feet.

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I always need to get a tree that’s taller than I am, but I guess I sometimes forget that I’m not as tall as I used to be. I don’t think I was ever nine feet tall, though, as is this year’s tree, lightly kissing the ceiling in its corner location, perfectly situated for viewing by passing boats.

DSC_7866It’s a nostalgia-fest, putting up the tree. Jordan made this ornament in kindergarten, and that was 35 years ago. In those days, Shel and I hadn’t met yet, although he’s forever wishing that we could have gotten together when he was young and healthy. Because we’ve never known a life together without cancer, and that can get pretty exhausting, even amidst the sparkle and ribbons.

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We try to reflect the joy and beauty that the season calls for, but this year our happiness seems like a pale reflection of its former self.

DSC_7885My lovely pomegranate ornament reminds me far too vividly of the CT scan of Shel’s lungs, all full of spots, and I’m so sad not to be able to see it otherwise.

DSC_7870We try to store up strength for the winter, but I can’t help but feel that we’re just barely hanging on.

DSC_7869My fury at his illness is really boundless, and I would take swift and fierce action against it, if only I knew what to do.

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All we can do is breathe in, breathe out, stare death in the eye, and possibly, bake some Christmas cookies. That’s the ticket, get up to my ears in baking and wrapping and giving, and quit all this pesky thinking. Cookies, coming up.